Sometimes, you decide to get a second opinion. And sometimes that second opinion results in a drastic change to your treatment plan. Truth is, I had always planned to get a second opinion, but once I started chemo, it just seemed like such hard work. My executive brain functioning is at an all time low and I’ve been using all of my reserves to work and keep my children happy and alive. The idea of reaching out to an alternate medical center and getting them up to date with where I am at in my treatment seemed mind-blowing. But once I confirmed that I had Metastatic Disease, it seemed like the logical thing to do. I mean, in theory I’ll be dealing with this for life, so what’s a little effort toward a different point of view.
I called both Memorial Sloan-Kettering and Dana Farber Cancer Institute. Dana Farber made it so easy I couldn’t not go there. A patient navigator, Brittany scheduled my appointment and arranged for my records to be sent. I spoke with my doctor’s here and they faxed over everything else that was needed. All I had to do was pick up disks of all of my imaging (CT scans, mammogram, bone scan, etc.) and drive down. I spoke with Brittany last Thursday and she scheduled me for the following Tuesday.
Dana Farber Cancer Institute is like the Gold Standard of cancer care. The interior does not look like any hospital I’ve ever been in. Dare I say, it’s cozy. That’s right. Also everyone treats you like a VIP. “Of course, you’re Maggie Van Duyn, right this way!” So immediately I was impressed with them. My appointment was at 8:30 and I was seen at 8:30.
Dr. Christina Herold (who looked so much like Amy Sedaris my sister could barely take her seriously) entered the room and introduced herself. She was warm and kind and lovely…..And then, do you know what she said??? She said, “Maggie, I’ve looked over all of your paperwork, but I really want to hear your story. Tell me how you discovered this and how you find yourself here.” The social worker in me, greeted the social worker in her and I told her my story. She did not rush me. She answered all of my and my family’s questions. She spent over an hour with us. And she hugged us in the end.
Here’s what she said. Metastatic Disease is incurable, so we need to treat the disease differently than if we were trying to “cure cancer”. It’s a chronic illness that needs to be managed. I can spend many years in CR (complete remission), but the way we go about that is often different than if we were trying to eliminate the disease. The sub-type of cancer I have is ER/PR + and Her2-negative so there are a lot of tools that the medical field has to manage the disease.
What the ER+ means is that my cancer is fed by estrogen. And so, the primary goal is to eliminate the source of food for the cancer. 90% of the estrogen produced in our bodies is produced by the ovaries. There are 2 ways to stop the production of estrogen in our bodies. One is a drug called Lupron. Lupron is administered by injection, once a month. Sometimes the estrogen “breaks through” at the end of the cycle. Another way is to remove the ovaries-what’s called an Oophorectomy (which I can only say with an accent like Rosa from Orange is the New Black). That is what Dr. Herold recommends. An oophorectomy.
Apparently, oophorectomies are no big deal. You go in for the day, get a little laparoscopic surgery and then head on home at the end of the work day-returning to your regularly scheduled activities within a week. Science is cool.
Then she recommends that I go on two medications-Letrozole and IBRANCE®. I will take those for as long as they work (5-10 years maybe). If the cancer “breaks through” that we figure something else out.
She does not recommend a bilateral mastectomy and, in fact said Dana Farber doesn’t really do them for people with Metastatic Disease. And they definitely would not do Radiation. Mastectomies and Radiation are used when one is trying to “cure” a disease and that’s not the reality for me.
Now, I’m all on board for dropping radiation off of the treatment plan, but it feels a little counterintuitive to me to leave the cancer in there when you could take it out. The Breast Guru reports that there is some data showing that removing the primary tumor (left breast) can be helpful. Dr. Herold believes that the elimination of estrogen and the combination of the medications is the “single most effective treatment” there is for shrinking the tumors and achieving “progression free survival”.
I have yet to discuss with my doctors here in the 802 to see what they think. The ultimate goal is to keep me alive long enough to find a cure for the disease. So rest assured I’ll be considering my options and raking the internet and trying to figure out the best solution there is to live a nice, long life.